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tv   Book Discussion on The Gene  CSPAN  June 19, 2016 10:00pm-11:01pm EDT

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>> i am a the co-owner of politics & prose on behalf of my wife here, welcome. we really enjoy posting author talks in this truly wonderful then you and the staff and i have with the executive director here this evening and everybody else deserves a lot of credit and recognition for turning this place over over the last decade such a vibrant center of cultural life in the washington area so let's just give them a round of
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applause. [applause] in a minute we will hear allah about human dna but i want to take a moment to say something about community dna. an important element of community is to have a local bookstore many independent stores do exist in fact, our numbers have been growing over the past few years after years of decline but thanks in large part in support to many people like you to continue to value near neighborhood bookstores when you feel the urge to buy a book due shop local you can get the full bookstore experience by coming to politics & prose and i mean personalize service and advice from experts as raw as a sense of discovery that comes from browsing the bookshelves.
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if you want to order online you can go straight to our web site and click on the book that you would like. now to the human dna in a great guest, back in 2001 when the pulitzer committee awarded the nonfiction prize day phrase this as a delicate in korea once was clinical and personal he has done it again in his new book that tells a story of the development of genetics by leading science and social history as a personal narrative of his own relatives and as in the acknowledgments he was so physically and mentally exhausted he had not expected to write another book but it turns out it is a natural paring as a prequel that he calls it
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that it focuses on biological normalcy before things are distorted into the malignancy. have you ever wondered how much of our lives is determined by our genes or depends on external or environmental factors? then you need to read this new book but don't expect a simple answer because as you will hear it is complicated. a word about his past back to his student days that were just a couple of decades ago he was already distinguishing himself to stanford and studied immunology then went to harvard medical school today he is an assistant professor of medicine at columbia university and a staff cancer physician at the medical center. this will be a conversation this evening with someone who is obviously u.s. may
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use of her own genes, the co-anchor and managing editor of pbs newshour one of the most accomplished journalist in television today please join me to welcome our guest. [applause] >> thanks for the gracious nobody is ever introduce me by saying good genes. [laughter] if you were captivated by the emperor of all maliki she will be more than captivated by this as an intimate history. i feel like my microphone is a little bit loud.
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there are so many ways ever like to begin but hearing your personal story after you completed after the years he had worked on the book and you said you were exhausted but then something else was going on in your mind about family and you write about that in a way that just pulls every reader in. what happened? what was going on in your life? >> interestingly i did not think of it as to name that as the book but as i was growing up i had this history of mental illness in my family. one with schizophrenia and one with bipolar disease and a live with that for many
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years it was very much a part of my family. and then sometime in my childhood my cousin on my father's side was also diagnosed and institutionalized. and that elephant in their room witches of analogy for india. [laughter] and that would not go away most families my parents were elevated to the museum part but they could not deny that any more that the idea this is very much a part of their life. and the heredity component in that is when we began to talk about it salah was treating patients all of this history was constantly
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in the back is like a buzz in the back of your head. am i one of those? who else? is the figure that is needed? so this was my story long before it became my story. in fact, and then i just kept coming back to the idea and as i said it was like "star wars" as a prequel. [laughter] >> you dedicate the book to to people but one of them were jerome grandmother because she was involved very much to take care of your uncle who was mentally ill so there is a powerful story there also won a want you to read from the start
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of a book when you were with your father and went to visit your cousin. >> i will read a little bit from that this is where the story really begins so thises the prologue of the book the blood of your parents in the winter of 2012 revisited my cousin my father accompanied me as a companion in front of the brooding presence my father was the youngest of five brothers with since 2004 he
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as been confined to an institution of the mentally ill and diagnosed with schizophrenia awash tennessee of anti-psychotics additives in the watch feed him throughout the day. my father has never accepted his diagnosis over the years he has waged a of a campaign against psychiatrist hoping to convince them that their diagnosis was through air or somehow he would magically fix himself i visited twice once without warning seeing him with a secret the normal life. but we do there is more that was at stake for him. he wasn't the only family member with mental illness of the four brothers that
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suffer from various unraveling of the mind madness it turns out has been around for a least two generations and part of my father's reluctance to accept the diagnosis lies in the recognition it to be buried like toxic waste. that is the first paragraph of the book. >> did your family you saw that growing up and heard stories about it and a up your grandmother was very much an influential figure in you saw how she was toward your uncle. >> he came to live with us because he could no longer take care of himself. in this nuclear family growing up of those aspirations it was also present as of revenant. >> and for you years later
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later, just the idea that in your family you were constantly thinking about this with just one generation or the next it wasn't everybody or every cousin certainly not you but that was the impetus that makes you think they wanted to spend more time looking at the genes in the genetic mystery there is a connection to cancer but you really were embarking on a completely different ambitions story. >> and i published a small excerpt from the book on schizophrenia with the picture of me and my father that was really the first thing that i wrote i sat on the for many years and didn't do anything with it but that was the first thing that i wrote what they finished and a rope that privately i did not publish it in was just part of my
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writing process but what is interesting as it went back to it and the genetics at least shows its little head it is just about family the idea of genetics those genes stockman to it is a reminder that it seems to be an abstract concept in life as people talk about it in laboratories genes have to do with family. with how you and i are made who doesn't have a relative doesn't affected by something? from the interaction between genes.
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i look at those seven pages and this is really about family and living organisms and that is the conception of the book. >> you wrote this before i asked, you said some of the history here in the amazing figures, you write with a sense of urgency you felt it was important to get this down now because there is a lot going on in the science and you had a sense it is important for people to understand themselves and don't just leave it up to the experts. >> i will give you a sense of what is going on in science as we move forward forward, we're learning to read and write the ice human
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genome by reading a mean obviously you know, in 2002 we obtained the sequencing and by that i mean that is what it is. the entire repository of genetic information for yourself from a human embryo written in alphabet code. i don't have it memorized i making it up. [laughter] but here's what is interesting it goes on for 3 billion letters and if you imagine it as an encyclopedia it would be 66
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full sets of encyclopedia britannica it would line up all the edges of the room if you picked it up it would read all the letters but yet here is what is amazing but from out of that four-letter code is you and me an astonishing fact that that code becomes you and me as a small variation and that is the difference between you and me so now going back to what technology allows us to do is to read the code and to emphasize very clearly being able to predict what might happen in your future in just to give one example
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we have the one gene mutation is not 100 percent you will have breast cancer but your risk may be 10 times higher than women who don't. if you have cystic fibrosis gene mutation in both parents of father and mother in disney 100 percent. if you have another mutation i could tell you from your embryonic cell you will have that diseases 100 percent so that is reading it and now it is more complicated now i can tell you more, but they did things -- complicated things and people started to explore but potentially it is about our identity so
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those of the territories that we should have some moral concerns about and writing it means not only can i just read it but now i can actually go and make directional and intentional changes through astonishing technologies that we can learn to use that allow us to go into the 66 volume and pick out one of them the race one word put back and we think we're not sure yet all the other 66 volumes and touched. so it seems to me once and never acquired these technologies we need to learn about them we cannot let this happen in the laboratory. last week there was a
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meeting at harvard were they proposed synthesizing the entire human genome by splitting together the single letters so that you could synthesize technologies then take the entire human genome is not a science fiction fantasy we're not there yet but all the technology that allows us to get there are assembled and this is the time to think about things and for me to think or for you to think about other illnesses or the identity you may be interested in this is the time and if you don't we will get this unbelievably important piece of history that we might not want to give it to. >> you write about syria and
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not so long ago the with the study of genetics headed in a terrible direction and the do know some pretty horrible things but go back to a little bit of a history because so much of what you just described passed in the last 10 or 15 years may be last month. [laughter] but it is humbling to know that aristotle was thinking about this and the information and sat there then another couple of thousand years before darwin started to do his work then after that other interesting actors of people along the way he worked on genetics maybe they didn't even know it was genetics but it came to gather later so talk
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about that early work people though charles darwin. >> what is interesting is that of course, since the dawn of human history one of the first questions is widely looked like our parents? or not? the simultaneous contradictions the yen and the yang that is part of our dna forever who has a da's that question? when illness strikes a family we often ask why it didn't strike my father or mother? the variations of two identical twins are born. so aristotle had a theory and it is an astonishing fact he was an okay
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philosopher but a very good biologist. [laughter] >> i don't dig most people would realize. >> yes. i see him as a biologist completely but his philosophy emanated out of his desire of the french organic forms of all forms of life so aristotle realized what was really moving or transmitted across generations was some type of message and he said it is a little like a carpenter shaping a piece of wood. with that carpenter shapes how the organisms are formed when it shapes the piece of wood he doesn't shape it in
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a material way but it is information through the handiwork in to that piece of wood and that is what happens you're transmitting information or a method and that is how it takes that form a remember exactly when that point in time was that this was back in the day when people were debating how guide gave us form and then there is a long silence after that for a while people thought in fact, that this was so complicated how earth can a fully formed human being developed?
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when a woman conceives? how could that possibly happen? they made the argument in the 1600's in fact, a tiny miniature human being was living inside the sperm. [laughter] and actually drew pictures and he thought about it carefully the that the animal would generate its own children that is sitting inside and so forth infinitely miniaturized and it is a little crazy if you think about it toward the future but this was one of the most popular idea is of how we transmittal like nests to the center of the gene.
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>> but what he figured out and shared really just sat there for a couple thousand years then comes charles darwin dorr when he did important work but then there were others who came along about were not appreciated at the time one of them was among i thank you spent some interesting pages on. >> yes. it is a fascinating story and he launches the book with the modern history of genes and mendel realizes ashes very interesting that both darwin and mental is instructive that there was a time when spiritual lives down no contradiction between exploring a the universe and the material
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form somebody should read them or we should force them to over the capacity in the compassion that they've brought to that individual exploration was incredible but a fascinating character was a monk and mantle began to extremely simplified that was his trek and his main insight was to simplify the veracity of ideas around genetics and he said i will forget all about that all i will do is study with concentration what happens to one or 27 individual features across multiple generations.
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here where people were talking about hugely complex experiments of embryology hear he was sitting in a small monastery where he said all i will do he didn't coin the word genius he didn't know what they were but at the end just by mathematical reasoning he realized there has got to be something there is a unit of information between the parent and the offspring spirituous trying to understand he wanted to work with vice but they would not let him. >> that was a little too risque. [laughter] they are far away enough so vice been since time in his monastery so i went and
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traveled you can get to it easily so i travelled over and i arrived there and i have come at sunset and i said i have arrived all this way for the first place of biology she said i'm sorry it is closed so this is the czech republic and i pleaded i said i've come all this way i just want to be inside and see the library she said no sign an application and i said who? completely without any irony she said to me. [laughter] so i am from india i said to comply at this game i said i hereby apply you so she was defeated and lesbian. [laughter]
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so i spend four or five days going back and forth to be in the library seeing where he planted those peas that generated this thing. >> with the work that he did was not appreciated for a long time he was scorned but at some point there were a number of other important figures but remind us who came up with the term genetics. >> remember he did not have that word in his vocabulary his main point is. >> but once it's done with his work he sends copies of his report he condenses it 40 pages then set out to the scholar of the centers but everyone said what is she
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writing about? why should we be reading this warriors studying bosnian biology and god knows but anyway then in the 1900's soon after 1909 there is the word in gene because they began to say to themselves there is an abstract is it a molecule? is a structure? but something carries the information we know it is important so we have a word for it so one of mantle's great students points to the word genetics from genius from all the work coming together so that he coined
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the word gene for genetics and then his colleague says that is the discipline that has to name the thing so the name in the gene. >> and the work so it fits and starts other's progress then it's it's back and you do an amazing wonderful job to bring to life these people who really probably lead on extraordinary lives. . .
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the dire desire to manipulate hereditary, has long been around darwin's cousin invented the term eugenics. we will set that aside for a second. he's a fascinating character. he was a great mathematician but he also lived in darwin's shadow all his life. can you imagine these two giants and you're supposed to be in child prodigy but he coins this
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term eugenics because regardless of what the gene is whether it's a gene or no gene we can use human heredity by manipulating heredity we can make that human being. he thought that if you selectively breed the best human being you get a superior -- this is what i discovered, it's it's a progressive idea like taking evening walks or getting a healthy spot. many progressives said this is a great idea we should do more of this. so it took off in england and stayed in england and that idea then metastasizes and reaches the shores of this country. it mingles with the kind of
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yankee practicality and becomes, it morphs into not just let's breed the best but let's sterilize those of very bad genes which ultimately escalates slowly and leads to a case that many people know the carry buck's case. carrie buck was a woman who was accused of having bad genetics and was sterilized on that pretext. the great judicial moderates, the case climbed to his court and he said three generations of imbeciles is enough. she was moved to a state holiday and she was forcibly taken to an operating table and forced to be
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sterilized. >> there is no evidence that she was of poor health. >> no there's basically no evidence. if anything she was, she was a bit of a rebel. >> you are saying to me earlier today that you felt it was so important and she is one of the two people you dedicate the book too. it's so important to remind people that this is happening. it's just nazi germany. >> right. so to finish up this story, and metastasizes again and then moves from selective breeding to selective sterilization to selective extermination and that is the final incarnation. that's the carbon carnation that we now remember her by. we remember it not by eugenics but beginning by people who have mental illness moving on to things like depression and then moving on to racial and ethnic
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human cleansing that the nazis brought to their full reform. i put that right in the middle of the book. i wanted to start the book with that idea but then i realized that i wanted to start the book with the german imbeciles but i realized it's much more chilling to watch it happen in front of your own eyes. the road to that menace to that gasoline a switch paved a desire to emancipate, the desire for perfectibility and the desire to make ourselves better ends up, in less than 30 years, in extermination of someone who has a mental illness. >> i think we all want to believe that could never happen again, but as you said a moment
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ago, because of the incredible advances that have been made in such a short time, people really still don't understand. what do you think the possibility is that decisions could get made right now or in the near future that are not a repetition of some of the worst that you describe but that we could head off in a direction that could be hard to turn around. >> i can give you all kinds of examples and their relevant today. one is the united states and one is internationally. i personally think, i think it's very unlikely that we will have a state-mandated form of eugenics in the united states in the future. i think what's interesting and what's much more difficult to contend with is that were entering an era of personalized eugenics in which we can sequence, this technology is available today.
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very soon you should be able to sequence every single gene of your unborn child. the question you need to ask yourself is what do we do with this information. you won't know what to do with information unless you know what genes are and how they interact with other genes. that's of course one arena that's important. meanwhile let's not forget that the largest eugenics project is already going on in india and china. in some parts of india there are 700 women to 1000 men thousand men. in human history there has never been this gender ratio. that is that eugenics project. let's not make any bones about it. that is fostered by science, beginning with ultrasound diagnosis in ending up with amniocentesis and gender diagnosis through chromosomal means. welcome to the eugenics.
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were already part of it. it has destabilize society there. it has destabilized the way we think about it. it's not some other world problem. this is our world problem. the faster we accept it, the more we understand it, the more armed we will be enable to mitigate against the effects internationally. >> it's clearly a case of the science being ahead of where government policymakers are prepared to make decisions. how much of that is a practical effect right here in the united states right now? you talked a minute ago about the work that is being done to edit jeans and what you just said about creating a person synthetically. >> yes, we, if you have a
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genome. >> , do scientists sit around and worry about that, think about it and how much do they talk to policy markers? >> we think about it a lot but the policymakers don't have the knowledge to understand what the implications are. there is an important meeting that i described in the book that happens in the asilomar conference and my mentor for many years and scientist discovered that technology could cut and paste genes together in the 1970s. he won a nobel prize for this and essentially it's relatively simple technology. you take one piece of dna and you cut it up using tiny pieces
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of bacteria and you stick them with another enzyme which is used when your dna strands break because of x-rays and you stitch them back together. you maintain the integrity. if you just combine these two other pieces, you can suddenly start taking a gene from a fraud and stitching it together with a gene from a virus. you can take to genes of any sort and this is important technology, cancer drugs are made, you because the genetic code is uniform and universal you can take a code from a blue whale and put it into monkey sales and the monkey cells would recognize it as a monkey gene and make it as a monkey gene. that's why one year until we can
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figure out what the steps are. it is possible, at at least within the united states to put this on a moratorium on editing human genes in particular kinds of cells. maybe not every cell but maybe embryonic stem cells although that's unlikely to happen but
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human embryos may be. to finish up, there's an experiment in china that was published where they went ahead and tried to make gene editing in a human embryo. they tried 76 embryos and tried to make it defined genetic change. >> what was the result west mark. >> we don't know fully the results because it was piecemeal and they were nonviolent bureaus but the quick answer is that they could make genetic changes in human embryos. >> what does that mean? >> that means that in principle, you could, could, if you take the technology you could say to yourself i'm interested in, and i talk about how you might treat that in the real world, the chinese experiment is not a great way to do the experiment experiment but you might say
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i'll try to erase the cystic fibrosis gene from my heritage or i'm going to try to change a mutation or variation that causes alzheimer's disease from my heritage. in the bizarre scenario you might say want to add information back to the human genome which you could do. you could add information to the human genome. >> we want to make people taller or something. >> and i talk about this. smallness or height is certainly genetic but at least five or seven genes govern that. would you change five or seven genes? maybe you could but also they say you can add information back to the human genome. >> that is a surprising thing. we should take that very seriously.
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>> we will take questions from all of you in just a couple of minutes. before we do, how do we make sure, be thinking about your question. how do we make sure this kind of work goes in the right direction? >> while i think there has to be some international consensus on health because the next thing you know there will be a race and they will start making genetic interventions and outline a possibility. it's an experience that happened , long before the atomic bomb was made they were saying there's no such thing as the atomic bomb. but just walk through your process in your brain you end up unleashing immense power in a concentrated manner.
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like the president said, this could create a weapon of great destruction. nothing's been been made yet. it's just that you can walk the mental steps to it. i could agree to walk those mental steps and figure out what the possibilities is and we need to make these steps internationally so we can figure out what the realm of control is. i suggest a kind of framework that hopefully we can skip to before we enter an era that we don't want to enter. >> so were going to take questions so i guess there are couple of microphones. before they come to the mic, when i think about what you do, i think about the book you wrote on cancer and the work you did with public television and sharon who is here and works with you on around these, i
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think think how do you even have time to sleep because you are a scientist. you're an oncologist and you write books, your husband and a father and you have a life. how do you do it all? >> this book came out of such urgency that it had to be written. i sort of prioritized it and looked over everything. it took five and half years. it seems that it came up one morning but it took five and half years. it took a lot of time and i spent a lot of time on it. a lot of it was going back to these stories. i thought to myself, if i can just knit together the stories, one after another, i would achieve. >> it's kind of is extraordinary that you can get all done. let's start over over here. i can't see very well but step over to the mic for your question.
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i just had a question for you regarding the lines of this discussion drying on some of the work that you have written about in genetics i think we are starting to find a lot more information and evidence about the transformational, information, i was wondering in the spirit of this conversation about understanding the ethical and social considerations of new scientific findings, what those would be generationally. >> this is a very important question. the question is, to what extent, we know that genes transmit information across generations. lately there's been a lot of interest in finding out whether or not things that happen to you in the environment can also be transmitted across generations.
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the evidence for that i think is very, very minimal right now. it's new frontier and the famous experience experiment was the gruesome experience experiment where he removed the tale of one generation of mice and he waited to the next mice to be born and he took that tail off and so on. he kept doing this for multiple generations and not even 1 centimeter of tail was lost. we know that as significant a trauma as it were as having part of your body cut off in the case of that poor mouse, it does not register across multiple generations. it does not change. there are some inkling that starvation responds and creates changes that are span across
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multiple generations. it's an entirely new frontier. of course that challenges the classical model of how genes transmit information. were still trying to figure out what is it, what is really the information that's being transmitted. >> what's amazing about it, and i think all just finish with this idea, what's, what's amazing is that genes actually protect us from that. genes were almost designed to wash away the sins of ourselves and our fathers. we reproduce and all of a sudden all the scars and the things that we have in our body are washed away and born in a new baby. it's a very beautiful solution to regeneration. there is evidence, there's detailed studies on starvation's and other things like simple organisms that seems to have some affect on generations. we have to find out more about it. >> we need to find a somewhat more cheerful aspect of
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genetics. >> thank you, my name is scott. for years we had this dichotomy between genetics and the environment. sociobiology and i've always thought of this as a false dichotomy. everything is dramatic and everything is influenced by the environment. the question is not if it's genetic or environmentally cause, it's how malleable it is, can't be it be changed? having poor eyesight is genetic and we can do lasik surgery and wear glasses. that doesn't affect our genetics that's a false question. i was hoping you could discuss that. >> it's not really a false question it's a western that lettuce in the wrong direction. i write about this in the book extensively. when someone asked the question if it's nature or nurture, the first question we should ask
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back is what are we talking about. what part of human biology are we talking about. all give you an example gender anatomy, it's strikingly genetic if you have that gene you will have one particular anatomy of gender and all the physiology that goes along with it and if you don't have that gene you will have the other. if you have some women inherit the xy who are are chromosomal e-mail but the one gene is mutated and if you mutate that one gene, these women are self-described as women. they most of their gender anatomy intact. there also diagnosed with the
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syndrome because they experience in fertility. gender anatomy strikingly governed by genes. gender identity on the other hand is a complex mixture, we know that. the idea, i talk about the distinctions in the book. the idea that now we have made a kind of pharmacist between genes and environment, it depends on what level of hierarchy we are examining and in terms of the question that you are examining. it's amazing to me that in this culture, in 2016, the human mind cannot understand the simple idea that something can be strikingly dominated by genes and some things can be strikingly dominated by environment and some things are in the middle. it depends on what were asking about. thank you for saying that. >> thank you. >> would you please elaborate on the recent developments in terms
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of cancer and gene modification, specifically breast-cancer. >> yes, so right now all of these technologies, it goes back to the point that were trying to make. all of these technologies can have very powerful affects and one of the things that the brain cancer is one that comes quickly to mind, there's a couple of recent important and potentially striking trials of gene therapy and brain cancer. certainly, the idea of genes being used in breast cancer has a rich history starting with diagnosis. they were identified genetically years ago and have really changed the lives of women who have that mutation. it's how we make that anti-body.
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the only way to make it is an anti- body to take a human gene and put it in a cell and that's the only way you can make that. when you talk about genes in cancer, they run run the gamut from diagnosis to genetic therapies to the creation of new drugs. we would not be here if it were not for genetics and genetic engineering in particular. >> thank you. >> which promised you feel there is in that area? >> again it depends on what arena. antibodies for cancer is one of the most striking therapies these days. where'd using them more and more in a would not be impossible without genetic engineering. we used genetics to figure out what an anti-body was in the first place but we wouldn't know how antibodies worked without genetics. genes underlie all of these
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really miraculous advances. >> yes. >> so another example, remember this distinction in breast cancer, guess what those are, genes. estrogen and progesterone. it's a marker for certain kinds of cancer. the people didn't know that we would know how to treat breast-cancer. >> and the physicians have had to learn this very quickly. >> absolutely. they had learned very quickly. >> thank you, what do you make up or how close do you think we are to getting a cure for cancer [inaudible] >> so cure is a complicated wording cancer because it depends on the kind of cancer that were talking about. it has a very rich history detailed in the book.
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if you ask me what i think, i think they're helpful in some ways and can be hurtful and others print i think they're they're helpful because they refocus our attention at a time when our attention span seems to have degenerated and i think there are issues we should be focused on on how to help ourselves and help the economy and so forth. so rather than focusing on things that are not constructive, i think they allow us to rebuild faith in systems whether they be federally funded or self-funded, they are systems that can provide medical transformations. i think that's very helpful. the flip side of course is that creates a certain cycle of hope and people feel that they
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haven't met their technology and they haven't met their goals. i think it can be partially successful because it will allow us to clear out some cobwebs that have gotten in the way and i think there will be a backlash as well, 1010 years from now will be sitting in this room saying how dare we say this. >> we have time for two more questions. >> hello, we've been talking mostly about human genetics, but when it comes to policy and science being the head of policy, my first thought goes to gm owes. my understanding is that there's a huge gap between what is the scientific consensus and what the public perception is. i was just curious in your work.
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>> to be honest, actually actually did not cover gm owes because i actually think it deserves a full second book. i'm not going to write it. >> the issue of gm owes, i do talk talk about the technology to create genetic organisms extensively in the book but i don't go into the pros of cons or the pluses and minuses of gm owes. in brief, the one thing i would say is that our sophistication in being able to create these is increasing daily and that obviously raises the chance of unintended consequences and the greater biosphere. i'm actually less concerned about the unintended consequences locally and more concerned about the greater unintended consequences.
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>> we won't come that is a question. we will count that as a lead into another conversation. we will take two more questions. >> my question is almost identical to his. >> i was going to ask your opinion. >> my name is allison bro, i'm a a graduate student finishing up at the national institute of health and recently i've gotten interested in science policy. one of the questions that you had asked was how much do the scientists who do the science talk to the policymakers and you had responded something like the scientists talk science and the policy makers talk policy and


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